Towards values-based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders

被引：9

作者：

Venema, Annieke ^{[1
]}

Peeks, Fabian ^{[1
]}

Rossi, Alessandro ^{[1
,2
]}

Jager, Emmalie A. ^{[1
]}

Derks, Terry G. J. ^{[1
]}

机构：

[1] Univ Groningen, Univ Med Ctr Groningen, Beatrix Childrens Hosp, Dept Metab Dis, POB 3001, NL-9700 RB Groningen, Netherlands

[2] Univ Naples Federico II, Sect Pediat, Dept Translat Med, Naples, Italy

来源：

JOURNAL OF INHERITED METABOLIC DISEASE | 2022年 / 45卷 / 06期

关键词：

fatty acid oxidation; glycogen storage disease; inborn errors of metabolism; value-based healthcare; MANAGEMENT; GUIDELINES; CHILDREN;

D O I：

10.1002/jimd.12555

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Value-based healthcare (VBHC) intends to achieve better outcomes for patients, to improve quality of patient care, with reduced costs. Four dimensions define a model of intimately related value-pillars: personal value, allocative value, technical value, and societal value. VBHC is mostly applied in common diseases, and there are fundamental challenges in applying VBHC strategies to low volume, high complex healthcare situations, such as rare diseases, including inherited metabolic disorders. This article summarizes current practices at various academical domains (i.e., research, healthcare, education, and training) that (aim to) increase values at various value-pillars for persons with liver glycogen storage diseases or fatty acid oxidation disorders and their families. Future perspectives may include facilitating virtual networks to function as integrated practice units, improving measurement of outcomes, and creating information technology platforms to overcome the ethical, legal, societal, and technical challenges of data sharing for healthcare and research purposes.

引用

页码：1018 / 1027

页数：10

共 45 条

[1] View from inside: Nina, Glycogen storage disease warrior [J].